Search This Blog

Subscribe to this blog

Follow by Email

Hope as a verb: DO! hope

So....Hannah's blog post (findhere) has been spinning in my head since I received it last week. Much about the post is brilliant, but what I have been turning over most is what she says about the limits of, or perhaps the 'role', of hope:

So while my story is one of hope, it is not a how-to guide. Hope is a wonderful thing and I am truly honored if my story can provide that for anyone but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary.

Hope is the reason to take action. Think about that. This is not touchy feel-y 'optimism' hope. Hope is the reason to take action: Hope as the agitator and catalyst. This is hope under pressure. This is hope shown through how you act and what you do. Hope as a verb.

"What it looks like when the illness is misdiagnosed and/or left untreated for years-AN" or,

"When we are confounded by particular combinations of comorbids and simply don't know how to treat effectively - AN". or,

"Phased out of Adolescent care under old treatment models and languished, now waiting for patient to 'choose' recovery-AN"

I could go on but you get my point: naming is informed by perspective.

The study poses the question: Where should clinicians place their focus with individuals who have been failed by treatment? The article states: ...Existing treatments for AN place emphasis on primary medical symptoms, most notably weight gain. This can be seen as indicated for the majority of individuals with AN where the traditional definition of recovery that includes full symptom remission is the ultimate goal. Offering treatment where the clinician is focused on weight restoration and recovery could be seen as ill matched to a patient who has been struggling with their disorder for many years and does not share these goals.

The study is a secondary analysis of data acquired during an earlier RTC exploring whether the focus for those with SE-AN may need to change to primarily address quality of life issues. It is, of course, not an either/or situation and this study does not present it as such. Rather the study cautions that treatments seeking solely to improve quality of life may be unlikely to produce lasting change and clinicians should maintain a focus on weight and behavioral symptoms as much as on improvements in quality of life.

In other words: Do not give up hope in recovery! Even when treatment fails....do not give up hope.

Where should clinicians place their focus with individuals who have been failed by treatment?

Hannah writes this in her last paragraph:

I want to tell caregivers that your loved one wants to get better even if they can’t show it. Nobody wants to live in the hell that is an eating disorder but getting out seems impossible and they need you to believe in recovery for them.

Hannah is speaking directly to parents with these words but they are applicable to all those who work with and on behalf of our children.

Do not stop believing in recovery. Hold fast and tight to 'hope' in your work and remember, in the ED context, hope is a verb..... you don't feel hope you do hope. DO hope in your work....no matter the length of time, no matter the 'severity'....DO hope.

Comments

I agree that naming is a powerful tool that can have negative consequences. And I believe in hope or I would not still be doing what I'm doing. What I struggle with as the parent of a person who has been in battle with an eating disorder for more than 25 years is there is indeed a "confounding set of comorbids." The eating disorder for many people who are invisible for the most part does not exist in a vacuum. There can be a severe co-morbid for which there does not seem to be an effective medication. What then? Perhaps quality of life indeed becomes part of the treatment in hopes that at least one of the co-morbids will burn itself out so that the person can actually focus on what needs to be done. Or perhaps quality of life thoughtfully and carefully provided will carry the person until an effective medication appears. Taking this a step further, I think we need to consider that labeling the caregiver or family or the team or the diligent therapist or the diligent psychiatrist [diligent meaning using all known resourcese] as the source of the failure can have its harmful consequences as well. Perhaps that word needs to be deleted from the conversation, too - for both the person with the eating disorder as well as those who are endeavoring to help.

I don't have a particular reaction to the four letter "S" word (SEED) - it's just an invented term for a longer lasting illness and doesn't have to be an excuse to give up. As far as I can see from the abstract (unfortunately the link to the whole article isn't working for me) the study shows that clinicians should NOT give up on active treatment for their patients whatever the length of the illness. I do totally agree though that the four letter "H" word (HOPE) should be a call to action and used at all stages of these illnesses

I have a problem with the term SEED and the term AN. Let's face it, with an approximate 10% death rate, we should call the most severe cases Anorexia Fatalis and support research to reduce the death rate like we do for any other deadly illness.

Post a Comment

Popular posts from this blog

MEDICATION I am going to begin this blog with a quote from my own book Give Food A Chance, but I will be
quoting from the only chapter (“Psychopharmacology”)which I did not write.
Here is Janiece Desocio RN, PhD, psychiatric mental health
nurse practitioner (PMHNP) at Kartini Clinic, speaking:“rarely do we think about food as having
pharmacological properties, but in fact, food is an essential source of the
chemicals produced by our brains to stabilize mood, moderate anxiety, induce
sleep, reduce pain, and regulate appetite…… the brain is a natural pharmacy”.
I want to begin a discussion of medication in the treatment
of childhood anorexia nervosa with this quote and its emphasis on food and
adequate weight restoration.Medication
should not be used as a substitute for good food and plenty of it.Without weight restoration you will get
nothing.
Many parents have written in to the Around The Dinner Table
forum to discuss medication in their child’s treatment plan.They cite their experien…

Eating
Disorders are serious mental illnesses with dangerous medical
consequences.Without early intervention,
eating disorders may become chronic or even fatal. Parents are often unaware of some of the
early signs of an eating disorder.Even
if they are aware of early warning signs, they are often uncertain and reluctant
to intervene out of fear of worsening the situation. Maudsley
Family Based Treatment (FBT) is one of the leading evidence-based treatments
for adolescents with eating disorders.Studies are underway to evaluate the effectiveness of early
interventions using an FBT approach. Parents Act Now is a study at Stanford for
early intervention for Anorexia and Family Internet-Based Early Bulimia Nervosa
Study is underway at the University of Chicago. This paper
describes how two clinicians trained in the provision of FBT …

"Wasting Away": A Channel 4 Documentary
To those who have watched, heard about, or who are discussing the Channel 4 Documentary “Wasting Away”, broadcast Thursday August 24, 10pm in the UK …
… a blog post from F.E.A.S.T.'s Chair
I watched the powerfully affecting documentary aired on Channel 4 last week, although I didn’t really want to; not because I don’t care about the story of Mark and his daughter Maddy and the effects of her illness on all of their family, and not because I don’t care about the others who were featured, many of whom have been failed or are failing within the scope of UK healthcare, but because I do care, very much. And because I knew that I would be affected, my family having once been affected by an eating disorder too, and because of what I have seen of how eating disorders have affected many families over my many years of volunteering for F.E.A.S.T.
Anyway, I watched, and as expected it made me both cry a little and shout a bit at the telly - …